Lifelong illness could create chronic insurance problems
NASHVILLE - There are many threads in the health care reform debate that are concerning to Erin Taylor, the mom of a 3-year-old son with cystic fibrosis. But the threat of being denied insurance that helps offset the costs of a potentially life-saving treatment is at the top.
Her son, Levi, was born with the genetic condition, which hurts the lungs and digestive system and leaves the body unable to break down mucus. He takes more than a dozen pills a day, including every time he eats — on top of twice-daily treatments to help break-up the mucus in his chest.
Levi Taylor will have the chance to live a pretty normal life — complete with sports, if he chooses — because of aggressive medical research funded by the Cystic Fibrosis Foundation. Despite the pills, he is still susceptible to colds that can become severe enough to require a two-week hospital stay.
Treating the disease will be forever, and it will be costly. Some children with cystic fibrosis go to more than 40 doctors appointments a year and pharmacy costs easily top $30,000. The costs can run well-above $100,000 if organs fail.
Right now, Levi Taylor is healthy and the costs of care are a big part of his parents’ monthly budget. Their health insurance plans — accessed through their employers — offset much of the costs.
“You can’t get more of a pre-existing condition than being born with something,” Erin Taylor said. “There are so many layers that worry me.”
Yet, there could be a point in the future, if health care reform takes a route that reinstates lifetime spending caps in health insurance plans, that his medical expenses exhaust what an insurer will pay. Or there are changes to how insurers are required to cover people with pre-existing conditions.
Congressional Republicans and the Trump administration have vowed to repeal and replace the Affordable Care Act, which removed lifetime limits on how much an insurer would spend on a member while on a plan. Under a limit system, a patient is responsible for all expenses incurred after the cap is hit.
In 2009, 55 percent of people in employer-sponsored insurance plans had a limit, often between $1 million and $2 million, according to a PWC report commissioned by the National Hemophilia Foundation, which wanted to raise or lift the caps. In the individual
market, 89 percent of people had a limit, according to Brookings.
About 25,000 people hit the caps nationally — a fraction of those in employer health plans, but a situation that could carry devastating financial or health impacts. The number was expected to grow to 300,000 by 2019 given rising health care costs in the PWC report that predated the ACA.
Lifting the caps was an early move by the ACA that assuaged concerns among people with serious chronic disease as well as those who received an unexpected serious diagnosis, such as cancer.
With a new round of health care reform debate raging in Washington, D.C., people with chronic diseases or serious illnesses fear the caps could re-emerge — endangering affordable access to care.
A $1 million cap might sound like a lot of money but a person with a cancer diagnosis or other serious issue, such as hemophilia, could run through the cap with a few procedures and treatments over the span of only a few years.
“When you look at $1 million, you may think that’s a lot, but, in reality, the cost of care is very expensive,” said Kevin Lucia, research professor at Georgetown University’s Center on Health Insurance Reforms.
Dr. Stephen Patrick, a neonatologist at Vanderbilt University Medical Center, saw caps in action in the previous decade when his mom hit the $100,000 limit her insurance plan placed on chemotherapy less than two years into her battle with cancer. In addition to caps on overall spending, insurers could cap how much they would spend on type of care, which the ACA also eliminated.
Ironically, the limits frequently kick in when people need care the most. Insurance was designed to protect people from financial ruin if struck by a serious health diagnosis or injury.